Quality of Life Research Resources

This is not a compendium, merely a "taster's special" of resources I've run across. My bias is searching for health-related resources, but some may apply to other domains. *** This page is under construction, so expect it to change frequently ***

Searching for Instruments for QOL Assessment Why create a survey from scratch when many mature (and tested!) instruments are available?
Popular Instruments, Surveys and Scales
Newsgroups and Discussion Lists
QOL Organizations, Conferences, and Journals
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Searching for Instruments for QOL Assessment

To get started, I ran a search at Google with the phrase "quality of life" (in quotes) and here's a sampling of what I found (6/26/01 update):

Researcher's Guide to the Choice of Instruments for Quality of Life Assessment in Medicine

Searchable database of instruments on broad range of medical conditions. Fee for additional details about the instrument, but even at the free level gives pointers to instruments you might have missed. From the MAPI ? in France.

Quality of Life Assessment in Medicine Internet Resources

Smorgaasbord of links, including instruments, groups doing QOL research, methodology, journals and the like. The index page is a little overwhelming but if you have a sense of what you're looking for can find it nevertheless. (Also at this link, but it's from 1998).

Medical Outcomes Trust -- Instruments Publisher generic and condition-specific assessments

Popular Instruments, Surveys & Scales

SF- Instruments (SF-36, SF-12, SF-8, ...)

"The SF-36 is a 36-item instrument for measuring health status and outcomes from the patient’s point of view. Designed for use in surveys of general and specific populations, health policy evaluations, and clinical practice and research, the survey can be self administered by people 14 years of age or older, or administered by trained interviewers either in person or by telephone. The SF-36 measures the following eight health concepts, which are relevant across age, disease and treatment groups:

*limitations in physical activities because of health problems;
*limitations in usual role activities because of physical health problems;
*bodily pain;
*general health perceptions;
*vitality (energy and fatigue);
*limitations in social activities because of physical or emotional problems;
*limitations in usual role activities because of emotional problems; and
*mental health (psychological distress and well-being).

The surveys standardized scoring system yields a profile of eight health scores and two summary measures and a self-evaluated change in health status." Source: Medical Outcomes Trust

On-Line Versions: If you're unfamiliar with the tool, you can try the SF-36 ver 2 or the SF-12 online with automated scoring. Gives you a table of norm-based scores for each scale along with bar chart with your scores relative to the means for each subscale with error bars.
How to get permission to use the SF-Surveys (ie SF-36, SF-12, SF-8) You must register with QualityMetric Inc, the sole license holder as of 1997, for either a Single User, Multi-User, or Commercial User license. Licenses require at a minimum that you own a copy of the scoring manual (see below). Only the Single User license does not require additional fees beyond the cost of the manual, but that's likely all an academic or institutional research project requires. ALL licenses now require you to report annually on your usage of the instruments. The licensing forms are on-line (Single, Multi, Commercial) but read the fine print first.
Scoring Manuals: Available from QualityMetric. Individual copies of scoring manuals are about $89.95 up to $310 when bundled with other products.

SF-36 version 2
SF-12: A test dataset to check the accuracy of your syntax is available via e-mail after purchase

Getting Copies of the SF-Surveys: This is a trick question -- you need to type it up yourself, but when I find a downloadable version I'll post it. The text is in the manuals.

SF Organizations, Developers and Related Links

QualityMetric Incorporated Main vendor and licensor of the SF-36 and related products. Founded in 1997 by Dr. John Ware, a co-developer of the SF series. QualityMetric became the sole licensor of the US English language versions in exchange to providing financial support to the other co-developer, the Medical Outcomes Trust.
SF-36.com "A community for measuring health outcomes using SF tools"
Health Related Quality of Life Instruments References for SF-36, SF-12 & Spanish versions of both

Miscellaneous Tools

The only logic to this listing is these are tools used in studies I'm working on, and I want a handy listing of resources.

IIRS -- Devins, 1981
PSQI -- Pittsburgh Sleep Quality Index, Buysse, 1989
CESD -- Radloff, 1977
Medication Taking Scale -- Morisky, 1986
HADS -- Hospital Anxiety and Depression Scale, Zigmond & Snaith, 1983, 1994. 14-item self-reported questionnaire for adults measuring present depression or generalized anxiety disorders, useful for both hospital and out-patient settings.
STAI -- Spielberger, 1968
___ -- Frazier, 1994
PCL PTSD

News Groups, Internet Mailing Lists (listservs) and Archives

ISQOLS Listserv -- About 500 members (click on the "Listserv" button for how-to sign up information) with a web-archive of postings
ISOQOL -- Has a new listserv; send inquiries to info@isoqol.org. Members are automatically signed up.

QOL Organizations, Conferences and Journals

ISOQOL: International Society of Quality of Life Research. Sponsors an annual conference (November 7 - 10, 2001 in Amsterdam). Publishes the ISOQOL Research Journal. Unfortunately, this site uses frames heavily, so sometimes get locked into their frames when using links to resources; also some pages show up as blank (like the journal page) (I use Netscape 4.7).
ISQOLS: The International Society for Quality-of-Life Studies
Health-Related Quality of Life at the CDC (Centers for Disease Control, USA)

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